Thursday, July 09, 2009

Jazzy de Lisser was born with hepatitis C and just six months ago heard she was too ill to continue treatment. Here, Jazzy, whose film of her life has won a Daily Mirror competition, tells how she coped.

When Jazzy de Lisser was just 13, doctors told her she had the liver of a middle-aged alcoholic.

The schoolgirl had known for 10 years that her mum passed chronic liver disease hepatitis C to her at birth.

“Mum thinks she got it from intravenous drug use in her early 20s, years before I was born,” explains Jazzy, now 17. “She’s been clean for 25 years.”

Jazzy was three when mum Serena Bute began to worry something wasn’t quite right. The tot’s stomach was painfully bloated and tests showed she had been born with the chronic disease.

It was only then that fashion designer Serena realised she had hep C, too.

At the age of six Jazzy and her family moved to London from Jamaica to begin treatment with Interferon – then the most common drug used to combat the virus. Image 2 for 'jazzy' gallery

“I had to just get on with my life,” says Jazzy, who has just won a film competition backed by the Daily Mirror with a documentary about her long battle with the disease.

“I didn’t really feel the effects of hep C other than being more prone to illness than my school friends and I didn’t tell many people because I didn’t want them to react differently to me.

“But when I was about 13 I started researching websites and found them so unfriendly and negative. I couldn’t get my head around all the ways they described hep C attacks and damages the liver. I began to really worry about what I had.”

Jazzy went to King’s College Hospital in London for an update on her condition where doctors said the scarring on her liver was getting worse.

“The doctor said Jazzy had the liver of a 50-year-old man who had been drinking and taking drugs his whole life,” says mum Serena.

Jazzy tried alternative therapies and even flew to Austria to see a specialist. But at 14 she got sick of restricting her diet and taking dozens of homeopathic pills every day.

So in September 2007, Jazzy switched her treatment back to Interferon but this time combined with another drug, Ribavirin. Together, they have a 48 per cent success rate in curing hep C in children.

Jazzy, whose stepdad is the former Grand Prix driver Johnny Dumfries, was inspired by documentary-maker Mel Agace to record a video diary of her treatment over 15 months.

Then she heard about the launch of the Daily Mirror, MediaBox and Bebo Your Film09 competition. It aimed to find young film-makers to make a documentary about something important in their lives.

Ten people were selected to take part in special workshops with Bafta mentors to transform their ideas into films.

Jazzy turned the diary into her award-winning short film My Story of C, which captures the highs and lows of her treatment – from promising test results, lying in bed in agony, to blazing rows with her mum.

“I’d never met anyone my age going through this and thought I could show people what it’s like,” she says.

The documentary captures Jazzy’s suffering caused by the drugs, as well as her mum’s guilt as she watches her daughter beg for it all to stop.

“The drugs were so invasive,” says Serena, whose own condition is stable. “It was horrifying to watch her suffer knowing I was the reason.”

Jazzy battled with the side-effects of the drugs as she studied for her A-levels.

“They made me exhausted and moody,” she explains. “I had blinding headaches and no energy. I got mouth ulcers and eczema and loads of my hair fell out.”

Jazzy initially responded well to the latest treatment but then tests showed the disease was back – in another form.

In January this year, after 15 months on the dual-drug regime, Jazzy heard the terrible news that the virus had become so bad treatment had to stop.

“I was really angry and upset,” she says. “I felt totally helpless.”

But she wasn’t about to give up and vowed to help others in her situation. Jazzy has built a website (livergoodlife.com) with the British Liver Trust to explain the disease to teenagers like her in a more positive way than the sites she’d seen.

She has also raised cash to pay Oscar-winning animation company Passion Pictures to create a cartoon explaining how hep C damages the liver.

Her next move is to raise money for equipment to help find new treatments. “I’m not going to try another treatment until there’s something with a very high success rate,” she says.

“A liver transplant would be the very last option and my aim is to get rid of this by the time I’m 21.

“One day I want to be able to say I have had hepatitis C and I’ve beaten it.”

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